Category Archives: Premature Birth

November, in the United Stats, is prematurity awareness month. In honor of preemies and prematurity awarness month, Michelle over at Preemie Blessings has started a challenge. Her first challenge is to answer on one of your social media networks who you are celebrating during prematurity awareness month. Now most preemie bloggers are parents so will mention their children. I’m not a parent, but a preemie myself, and I am just going to be bold and celebrate my very own self!

November is a tough month for me usually. It means adjusting to the end of daylight saving time, the start of colder weather and, well, fall and winter blues. November 2 also marks the anniversary of my first suicide note in 2001 and my suicidal crisis in 2007 which led to my psychiatric institutionalization. I know what it is like to feel like I no longer want to live, but I also know what it is like to feel like a surviovr, and to celebrate it!

I was born at somewhere between 25 and 26 weeks gestation in June of 1986. During my three months in neonatal care, I endured various complications. From one of them, retinopathy of prematurity, I’ve been legally blind all my life and am now totally blind. The others are a mystery in some ways. I had a possible brain bleed, but it wasn’t suspected until hydrocephalus was diagnosed in November. You know, they didn’t do CT-scans or MRIs routinely back then. I also had a lung infection when I was still in the NICU and RSV when I’d been home a few months, but not sure whether I had the A’s and B’s (apnea and bradycardia) that so many preemie parents worry about.

I once read this inaugural speech by a professor of neonatology or something, who said that lung problems, retinopathy of prematurity and brain bleeds are the three conditions that predict poor outcome in preemies. I don’t know whether this professor drew the connection, but I did draw one between poor outcome and “quality of life” and further worried that babies with all three conditions, like myself, should not be allowed to survive.

I still struggle with the thought that I shouldn’t have survived and with suicidal ideation at times. Life is tough sometimes, especially now that I’m worrying about the upcoming cuts to care that will take effect in 2015. I worry that I’ll be left to my own resources, like I was in 2007, and that I will fall into a crisis again. This worry has almost led to a mini-crisis already.

But let’s move on to the positive. I celebrate myself and my life, after all. Here are some things that make my life worth living.

Being married to my wonderful husband.

The support from people on social networking sites.

Being able to read Preemie Blessings and so many other lovely blogs.

The Internet in general.

Being able to express myself in writing.

My creativity and the help I get at day activities to express it.

My faith.

Today, I can say I’m glad to be alive. I say this with a bit of a knot in my throat, but I say it nonetheless.

As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.

I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.

So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:

I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.

Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.

I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.

My birthday is coming up on Friday. It was another Friday 28 years ago that I was born at somewhere around 26 weeks gestation. The doctors determined my gestational age to be 26 weeks four days based on what my mother told them and whatever measurements they took. Based on my date of conception, my gestational age may’ve been as young as 25 weeks two days. When I was a teen, this “mistake” led to extreme turmoil, for I thought babies before 26 weeks gestation were at the time not treated. The reality of my birth story is that the neonatologist, now a proponent of leaving micropreemies to die, informed my parents that they were simply keeping me alive and not to interfere.

Times have changed since 1986. For one thing, more is known about the effects of premature birth on health and development. For another, more attention is paid to parents’ and babies’ mental health. This doesn’t mean that PTSD doesn’t rear its ugly head at times. Today, I read a story by a mother of a 23-weeker, who clearly says it does. Then again, 28 years ago PTSD was unheard of in NICU parents. Attachment issues were unheard of in preemies. Today, we know better.

I know better. It isn’t my job to diagnose my parents, but they certainly experienced the effects the Mom in the above story describes. Time and time again, they’d re-experience the memories surrounding my birth. They shared with me, and that was mostly good. Some of it was not so good. Knowing my parents had questioned my quality of life and whether I should be kept alive at all, well, that certainly left some scars on my soul.

I learned about the possibility of the NICU experience being traumatic to the baby from another former preemie in like 2006. She was born in the 1970s, and much had changed between than and the mid-80s. Still, when I checked out the “About” page for the above blog, I was astonished to read that Jax, born in 2012, wasn’t first held till he was nearly two weeks old. I probably didn’t have it any better. I don’t mean this to whine, but it is a possible explanation, along with others, for my severe attachment issues. I know that attachment disorders can’t be diagnosed unless there is evidence of pathological care, such as abuse or neglect. The NICU isn’t pathological, but it most certainly is not a normal environment to spend the last three months of your would-have-been-preborn life or the first three months of your life out in the world in.

A few days ago, I was googling preemie parent blogs. I also was allowed into a preemie parent support group on Facebook. I disclosed right away that I’m not a parent but was myself born prematurely, but the parents loved to read my insights. One issue I’m struggling with in particular is that of quality of life as an argumetn for or against trating certain preemies in the NICU. One parent in the group said somethhing to this effect: that being loved beyond words is a good enough quality of life.

Even though I suffered from about every major complication in the NICU that is used for quality-of-life indicators – eye damage, a brain bleed, lung problems -, and I came out having major disabilities, I consider my uality of life pretty good. I realize I could’ve been more severely disabled, and that many parents deal with kids (and eventually, adults) who need more care than I do. Heck, on my ward I fall right in the intermediate range of care needs.

My parents at one point were in doubt about whether I should be treated, but they were told off by my neonatologist, saying they were just keeping me alive and not to interfere. This neonatologist later defended rigid policies on preemie treatment (whereby babies under 25 weeks gestationa re not treated), saying he sometimes meets preemies about whom he thinks: “What have we done?” I wonder at times if, were he to meet me, he’d think the same. I know that, judged by my writing, I’m pretty high-functioning, but I do need substantial support.